Dying with dignity is not giving up

Second in a three-part series about palliative care in the Jewish community

TORONTO — The popular image of a doctor is of a healer who helps patients recover from whatever ails them.

That’s also what they likely imagine for themselves when they enter medical school and later when deciding on the type of medicine they want to practice.

Yet even patients who have no chance of recovery need a physician to help them live out their lives with dignity.

Often, doctors who work in palliative care began their careers with other plans, but can recall an incident or patient that inspired them to work in the field.

Dr. Daphna Grossman, a palliative care physician at Baycrest, remembers the exact moment she decided on her specialty.

“I was doing a fellowship in emergency medicine, and a man with metastatic lung cancer came in with cardiac arrest. While the [doctors] were pumping his chest, I thought to myself, ‘This man should not be dying like this. He should be dying with dignity.’ It was a light-bulb moment.”

She said that if people truly understand their loved one’s illness, they would be able to make a more informed decision about treatment.

“When people who are extraordinarily ill [come to emergency], should we aggressively try to bring them back, or should we let them live their life as best as possible and die [comfortably?]”

Grossman said that dying with dignity is not giving up.

“It is dying of a chronic illness. What do you want it to look like? Do you want [the patient] to die with tubes in a hospital bed, or be surrounded by family in comfortable surroundings?”

She said that patients in palliative care do receive antibiotics, if necessary, and drugs such as morphine might be used so they can breathe more easily. “We shift to comfort care. We deal with the symptoms, because we know we can’t deal with the underlying condition. The trick is to understand when someone is dying, so when they die, they die comfortably.”

Most people tend to think of palliative care as end-of-life-care, she said, “but really, good care can be given at any point of an illness. End-of-life-care is end-of life care, but palliative care is more holistic. It is about symptom control at any point of an illness, and it can be in conjunction with acute care.”

Palliative care involves a multi-disciplinary approach, which includes a number of professionals, Grossman said.

“There are physicians, a geriatric psychiatrist, clergy – a rabbi or priest to make sure spiritual needs are met – a physiotherapist, a dietician, a swallow expert to teach the patient to swallow properly, and a recreationist.”

Dr. Adam Rapoport, medical director of the pediatric advanced care team at the Hospital for Sick Children, is also a palliative care consultant at the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital.

“I often ask myself how I stumbled into this field. [But] along the line, I have dealt with many children from birth to age 18 who have conditions that we could not cure,” Rapoport said.

“Children with medical complexities are a growing population, and many who would have died 20 years ago are kept alive today through drugs, surgery and technology. Although they stay alive, though, their problems are not fixed. They are living longer with challenging symptoms.”

When he first became exposed to these children, he said, “I realized that we had to give them as good a life as possible. I knew that we needed to add life to a child’s time, not time to a child’s life. They should not just be alive biologically, they should be enjoying their lives. That’s what we try to bring to these children and their families,” said Rapoport.

As opposed to end-of-life-care, he said, pediatric palliative care strives for early intervention. “We work with families and try to help them [address] symptoms and control pain. Few parents embrace the idea of end-of-life care. They fight the disease and make sure every day is as good as possible.”

By integrating the philosophy of early intervention, he said, “we improve the lives of children and their families. As things begin to change, we can take more of a front seat.”

When his medical team is involved early on, Rapoport said, families become familiar with the doctors and are able to trust them. “When things do begin to change, we do not have to begin a new relationship during that very difficult time.”

Pediatric palliative care is much more about living than dying, he said. “It is all about how the family wants their children to live their lives.”

He admitted that many of his colleagues find it difficult to work in his field. “They are in the business of saving lives, and they don’t know how to help [these families],” he said.

“I realized that we have an obligation to be there, even if we can’t make things better, so I dove in and got a master’s of bioethics at University of Toronto. I started working at Temmy Latner, and then went to Sick Kids in 2011.”

This work is clearly not for everyone, he said, “but for me it is extremely rewarding. There may be a sad outcome, but for me it is about the journey. If the journey goes well, then I feel like I’ve made a difference.”

Community partners such as financial consultant Sonny Goldstein, have helped make his work easier, he said.

Goldstein, the founder and chair of Care for Kids (Toronto), raises money for palliative care programs.

“When I was president of Life Underwriters Association in 1991, we were looking to have a charitable giving arm, and one member told us that pediatric palliative care was in desperate need of money,” he said.

“We had a campaign, eventually raised $25,000, and used it to send nurses on home visits. In 1993 we formed Care for Kids, and since then have raised about $500,000.”

Dr. Russell Goldman, director of the Temmy Latner Centre, said that in 1992, when he was training in family medicine, he became interested in the court case of Sue Rodriguez, the British Columbia resident who had amotrophic lateral sclerosis (ALS, known as Lou Gehrig’s disease) and petitioned the Supreme Court for the right to assisted suicide. She lost her case, but eventually was aided by an anonymous physician.

“This case got me thinking. It’s not just about more time, it’s about quality of life.”

Sometimes the health-care team or the patients themselves are reluctant to discuss palliative care, he said. “We believe in communication. We’re not here to dictate. We’re here to help make decisions and to focus on comfort.”

His centre, he said, provides in-hospital care and provides home care. Through the Max and Beatrice Wolfe Children’s Centre, it also looks after children and their families.

“Our team provides home coverage for people with advanced progressive illnesses, and the team tries to keep the patients out of the [emergency room.] The physicians work with visiting nurses to monitor home care.”

Goldman stresses that his work is not depressing. “I find it rewarding. I get the opportunity to meet people in the most intimate way. I also work with a great group of people.”